Aspects of Asperger's Syndrome: Success in the Teens and Twenties
Publication Year: 2006
‘Once I started this book I was hooked. Where was this book 10 years ago? So many of the problems I have dealt with and worked out through triall and error are here. It would have saved many tears and tantrums — and those not just from me! Once purchased, you will use it over and over again, for reference’ — Communication. A thought provoking and practical book about how one supporter, a grandmother, helped her granddaughter search for ways to help her overcome the difficulties they both faced. This book does not dwell on the problems but instead looks for the solutions they found together. It will be useful to all those whose lives are touched by Asperger's Syndrome but especially meaningful to those ...
- Front Matter
- Back Matter
- Section 1: Introducing Asperger's Syndrome
- What is Asperger's Syndrome?
- Circles of Support
- Informing other People
- Asperger's Syndrome Information Sheet
- Alex's Rules
- What Rules Can Do
- Section 2: Daily Living Skills
- Organising Space
- The Daily Programme
- Eating and Drinking
- Personal Hygiene
- Packing for a Holiday
- Managing Money
- Section 3: Coping in College
- Behaviour in College
- Dealing with Differences of Opinion
- Independent Learning
- Assignments and Planning
- Progression in Planning
- Study Skills
- Developing Control
- Developing a Concept of Time
- Section 4: Relationships
- Friends and Acquaintances
- Romantic Relationships
- Valuing People
- Intimate Relationships
- Allocating Time to Maintaining Relationships
- Work Experience
© Maude Brown and Alex Miller 2003
Apart from any fair dealing for the purposes of research or private study, or criticism or review, as permitted under the Copyright, Designs and Patents Act 1988, this publication may be reproduced, stored or transmitted in any form, or by any means, only with the prior permission in writing of the publishers, or in the case of reprographic reproduction, in accordance with the terms of licences issued by the Copyright Licensing Agency. Enquiries concerning reproduction outside those terms should be sent to the publishers.
Rights to copy pages marked as handouts, certificates or overhead foils are extended to the purchaser of the publication for his/her use.
The right of the author to be identified as Author of this work has been asserted by him/her in accordance with the Copyright, Design and Patents Act 1988.
Paul Chapman Publishing
A SAGE Publications Company
1 Oliver's Yard
55 City Road
London EC1Y 1SP
SAGE Publications Inc.
2455 Teller Road
Thousand Oaks, California 91320
SAGE Publications India Pvt Ltd
B-42, Panchsheel Enclave
Post Box 4109
New Delhi 110 017
Commissioning Editor: Barbara Maines
Editorial Team: Wendy Ogden, Mel Maines
Designer: Helen Weller
Printed on paper from sustainable resources
Printed in Great Britain by Cromwell Press Ltd
We are greatly indebted to many individuals for their help and support at critical stages in Alex's development during her teenage years. Our thanks to:
Mrs Jean Jameson, teacher at Nailsea School, who first recognised that Alex's behaviour might indicate that she has Asperger's Syndrome.
Dr. Lambert, our G.P., who referred her for diagnosis.
Alexis Palmer and Jenny Pritchard, Social Workers.
The staff at Somerset Court, National Autistic Society (N.A.S.) college for people with autism.
The staff at Weston College of Further Education.
Pat Bugler for her patient, crucial counselling.
Annie Whitley at Connexions, for her superb continuous careers guidance.
The staff at Bristol City College of Further Education.
Special thanks to Grace Hewson and Maggie Potter for their invaluable comments and support.
The local N.A.S. branches and clubs and the MENCAP Advice and Advocacy Service have also given untold support in times of desperation and we are truly grateful to them.
Alex Williams has contributed so much to this book, giving tremendous practical help over the years, and our gratitude is unbounded.
About the Authors[Page iv]
Alex Miller received her diagnosis of Asperger's Syndrome when she was sixteen. As a young child she had given no cause for concern except that she was late learning to walk. She was thought to be somewhat precocious because of her constant chatter and the manner in which she talked to all adults as though she was their equal! When she started school her Nursery teacher commented that she seemed to prefer to play alone and did not mix with the other children. The rest of her primary school years were relatively uneventful. She liked school and was eager to learn.
Her progress through the secondary stage of education was very disturbed. She was constantly bullied and found it difficult to understand why she was always in trouble. She was keen to learn and eager to answer questions – any kind of questions – so she was often in trouble with teachers whose style of teaching included asking rhetorical questions. Alex did not realise that these questions required no answer and that when she answered them she appeared to be very cheeky. Bullying by other children reached unacceptable levels and she was moved from one tutor group to another. This made it even harder for her to make friends. Towards the end of her secondary school years one group of girls did try to befriend her.
Despite all her problems she achieved seven GCSEs. At the age of twenty-three she is now settled at Bristol City College, has a distinction in GNVQ Information Technology (intermediate), is studying for ‘A’ levels and is hoping to go to university to study Food, Nutrition and Consumer Protection.
Asperger's Syndrome affects people in different ways. Like many other people on the autistic spectrum Alex suffers from light sensitivity and has found it helpful to wear tinted spectacles (Irlen Lenses). The day that Alex got her lenses was fantastic. She saw the world in a different way and her behaviour became much calmer. She could see that there were no funny coloured shapes moving on the wall and the numbers on the television were not jumping up and down! In addition, people's voices were not resounding in her head. Fluorescent lights have always been a problem for her but her lenses are a great help. Fluorescent lighting makes her feel dizzy and she is afraid of falling.
Alex also has sensitive hearing so background noises during lessons make it difficult for her to concentrate. In contrast, when she is studying background music helps her to concentrate.
In her last year at secondary school one of her teachers saw a documentary on BBC television about a boy with Asperger's Syndrome and she was struck [Page v]by the similarities to Alex's behaviour. She telephoned Alex's grandmother, Maude Brown, and suggested that it would be a good idea for Alex to be referred for a diagnosis. This was done and, six months later, after several visits to hospitals for various tests the diagnosis was confirmed.
Since her diagnosis she has mainly lived with her grandmother. Her mother is widowed, has a full-time job and looks after Alex's younger sister and brother. All the family live in Nailsea, near Bristol.
Like many people with Asperger's Syndrome one of Alex's main interests is the television programme Star Trek. The character with which she closely identifies is Data. Alex feels that the programmes help her to understand different types of people. Another useful programme which she enjoys is Catchphrase. This programme helps her to understand common sayings.
Because she has a good memory she enjoys trying to answer the questions on quiz shows such as Who wants to be a Millionaire? and she is very good at it. Her geographical knowledge often arises from her interest in stamp collecting. Another of her hobbies is cross-stitch embroidery. This requires a great deal of fine motor control and although Alex excels at it she has extreme difficulty in writing, and everyone else has extreme difficulty in reading it! Her college has helpfully let her borrow a laptop computer on which to prepare her work. This illustrates the contradictory nature of Asperger's Syndrome which often means that some skills can be easily managed in one situation but not in another.
Alex has very much enjoyed the local clubs set up for young people with Asperger's Syndrome and their families. They have provided her with friends who often share and understand her feelings. She now also goes to a ‘Pub Club’ where adults with Asperger's Syndrome meet for a drink and a chat. This group organise other social events such as trips out and weekends away.
Alex says, “Since I was ten I always knew there was something different about me. The other children would laugh at jokes but I could not see what was funny. I found it hard to make friends and was often told that I had no common sense. When I was sixteen and I got the diagnosis I felt an amazing sense of relief but I still expected people to misunderstand me. I didn't like telling people because I wanted them to see me, the person, not me the Asperger's. I see it as a challenge to be overcome and I like to help spread awareness and meet other people with Asperger's Syndrome.”
Maude Brown was Senior Adviser for Primary Education in the County of Avon until her retirement in 1989. She was involved in the introduction of the High/Scope approach to early education in this country and some of the [Page vi]methods of working have influenced the strategies in this book, for example, the Plan-do-review sequence. Since Alex's diagnosis Maude's main occupation has been searching for ways to help Alex to overcome her specific difficulties but she has found very little practical help.
The best strategy that Alex and Maude have discovered for overcoming Alex's anxieties when she arrives home upset is to immediately sit down with pen and paper and write down all the things which are troubling her. These are written on the left-hand side of the paper and then they try to think of as many solutions as possible to each problem and these are written on the right-hand side. Alex is then able to refer to these notes whenever necessary. Sometimes it is also a good idea to analyse why the problem occurred so that it can be avoided in the future. They sometimes construct diagrams from the notes of their discussions and many of them are included in this book.
Caring for someone who has Asperger's Syndrome can be very stressful simply because they are frequently in a state of high anxiety. This makes it very difficult for them to control their behaviour. When she is calm Alex is a delight to be with, but when things are worrying her, life becomes turmoil. If she cannot sleep she will have to talk incessantly about her problems and this means that Maude has to stay awake for hours during the night and try to put things into perspective. It's a good job that she is retired and does not have to go to work the following day! From time to time medication to calm Alex down or to help her to sleep has been tried but doesn't seem to help. Many people with Asperger's Syndrome seem to react to medication in the opposite way to others. Families who have a member with Asperger's Syndrome will, from time to time, need support from Health and Social Services but this is very hard to find. Maude and Alex have had more help from voluntary organisations such as the National Autistic Society and Mencap than from the statutory services. Life is stressful enough without having to fight for every bit of help. However, things are improving and the Education services are now providing better support for disabled students. People with Asperger's Syndrome can be valuable contributors to society if they are given support when they need it.
This book is the outcome of the combined efforts of Alex and Maude. They hope that it may be useful to others who are seeking help.
Conclusion[Page 79]Alex's View
I feel I can manage in social situations a lot better than when I was first diagnosed in 1996, due to my maturity and careful guidance from my Gran. I enjoy going to my local Asperger's Pub and Youth clubs. I have also enjoyed going abroad on a study visit with my college group.
By the time I was sixteen I managed to get 3Bs, 4Cs and 2Ds in my GCSEs, and Youth Award Scheme silver level. I moved on to Weston College and got various office, accountancy and computing qualifications, before moving to City of Bristol College to study computing and science at A level standard.
In the past I have tried various tablets for depression and found that I reacted badly to many of them. I don't take any now and I feel much better without them.
I feel I can control my Asperger's Syndrome rather than it controlling me and I rarely get upset without being able to control myself.
At present I am attending a course entitled Intimate Relationships. It is a very good course and I am learning a great deal. There should be more courses like this for people with Asperger's Syndrome.
Next September I am hoping to go to Bath Spa University at Newton Park to study Food, Nutrition and Consumer Protection. In the future I hope to become a dietician and if possible work with autistic children and their families.Gran's View
Alex is a bright girl with a lovely sense of humour. Like many young people she has found the teenage years very difficult. This time of life holds more risks for those with Asperger's Syndrome and their vulnerability means that independence is achieved much later than usual. However, Alex is very caring towards her peers who encounter similar problems and does her best to help them. She has worked hard at her studies and shows determination to succeed. I am sure that she will be able to contribute to society and have a happy, satisfying future.
Bibliography[Page 80]1997), Asperger's Syndrome: A Guide for Parents and Professionals. London, Jessica Kingsley Publishers Ltd.(1974) Use your Head. London, BBC Books.(Collins COBUILDDictionary of Idioms (second edition2002). London, Harper Collins.Alex has recently acquired this second edition. The first one was so well used that it fell to bits! She finds it invaluable as it explains all kinds of sayings which most of us take for granted. It makes interesting reading for anyone although it was compiled for people learning English as a foreign language.1998) Asperger's Syndrome: A practical Guide for Teachers. London, David Fulton Publishers Ltd., & (We found this book particularly helpful. Alex read it and underlined all of the things she thought applied to her. She then asked Maude to underline anything relevant she had missed (see pages 5 to 8). Their resulting document was then discussed with her tutors.Frith, U. (1991) [Editor] Autism and Asperger's Syndrome, Cambridge, Cambridge University Press. http://dx.doi.org/10.1017/CBO9780511526770My Experiences with Visual Thinking, Sensory Problems and Communication Difficulties, http://www.autism.org/temple/visual.html1979) Young Children in Action. Michigan, The High/Scope Press., & (Leicester City Council and Leicestershire County Council (1998) Asperger's Syndrome - practical strategies for the classroom: A teacher's guide. London, The National Autistic Society.Although this is another book for staff in school, many of the strategies transfer quite well to the home setting.2001) Social Use of Language Programme (SULP). Windsor, N.F.E.R. Nelson.(revisedThis programme is suitable for use with secondary age and adult students. It may be used with individuals or groups.1998) Time Management for Busy People. New York, McGraw Hill.([Page 81]Alex uses this book a lot. It is good for her to decide what is helpful to her and it helps her to be more independent.2000) Martian in the Playground. Bristol, Lucky Duck Publishing Ltd.(2002) The Positively Mad Guide to the Secrets of Successful Students. Bristol, Lucky Duck Publishing Ltd.(1996) Autism, An Inside-Out Approach. London, Jessica Kingsley Publishers Ltd.. (